Building Connections: The Maestro Project

by | Nov 24, 2011 | Diabetes, Healthy Active Children

Building Connections: The Maestro Project – helping to support Manitoba youth living with diabetes during the transition from pediatric to adult care

“The social events and newsletters are always encouraging.  It’s good to talk to other diabetics.   If it wasn’t for the project and its coffee club I may have never gone on the insulin pump.  The project has made me interested in research and new product development. I have been attending the Bean Bags for over a year now – and I feel wonderful when I leave – it’s hard to explain. I love this project and I am very happy it is around.”

“It is difficult for anyone who is just starting out on their own to know where to find everything they need (medically speaking) especially in a city where there are few doctors taking new patients. It provides reliable, valuable information that fills a large gap in diabetes care.”

The Maestro Project is based on evidence that young adults with diabetes are a vulnerable group with high morbidity and mortality who require a unique age-appropriate system of health services delivery. Transfer to adult care comes at a time of intense social pressures in addition to physical and lifestyle changes. Young adults are faced with a transition that forces them to navigate an adult orientated health care system that differs in many ways from the pediatric system including philosophy, coordination of services and integration with physicians, diabetes educators, experts in psychosocial counselling and staffing levels.  Defaulting from care is known to be associated with premature death and complications of diabetes that could have been prevented or delayed with timely access to treatment.  Manitoba data from 2002 showed 25% of youth with type 1 diabetes and 35% with type 2 diabetes defaulting from medical surveillance within three years of leaving pediatric care. The vision of the Maestro Project is to provide coordinated case management by an administrative service navigator who can stay connected to young adults moving from pediatric to adult diabetes care to increase access to medical care and education and increase levels of support for maintenance of care connections.

Early support with a $75,000 grant from The Lawson Foundation facilitated the initial 2-year piloting of the Maestro model 2003-2004. “The Maestro” systems navigator, functions much like a conductor in an orchestra – working with attention paid to hearing the unique voices of all in the ensemble to identify strengths and address barriers to help keep youth connected to health services.  The Maestro service involved voluntary participation, frequent (telephone, email, social media) contact, a project websiteat, newsletters, coffee groups, access to peer-mentors, evening dinner events with guest speakers and a trade show component, and voluntary participation in annual community fundraising events such as the Canadian Diabetes Association Run/Walk for Diabetes. Results from the evaluation of the 2-year pilot were extremely positive showing a reduction in the default rate from 25 to 11% and with 94% of participants reporting a need for the project to continue.

In the ensuing years the project has provided assistance in transition to adult care and support to over 1300 young adults 16-25 yrs of age living with diabetes in Manitoba, and has made hundreds of referrals and re-referrals to health care providers and community programs for hundreds of participants. The project has worked to create a nationally known and internationally recognized community for young adults with type 1 diabetes.   It works with stakeholders and an ad hoc steering committee, to advocate for the development of increased services for this population. In 2006 a new young adult type 1 specific evening clinic was created in collaboration with community partners. Overall, this innovative service delivery model has resulted in enhanced patient access to services and decreased default rates and stakeholders have become more responsive to the unique needs of the young adult population. In-house quality assurance audits and participant surveys show that young adults are better connected to their care teams, more satisfied with the care they are receiving and attend appointments more regularly than when the project began. The project’s approach was shown to be feasible and effective and in 2009 the Maestro Project became a permanently funded program within the Winnipeg Regional Health Authority, Department of Pediatrics and Child Health at the Winnipeg Children’s Hospital.

Recently, the Maestro Project has embraced a new direction in focusing attention on young adults with type 2 diabetes transitioning to adult care.  This chapter in the Maestro Project story is still being written, but it is with much gratitude for The Lawson Foundation’s early championing and belief in us that we can in turn, hope to empower young adults to believe in themselves.

Amanda Mayer

Amanda Mayer

Director at The Lawson Foundation
COO & Program Director, Amanda has been with the Lawson Foundation since 2014. Cause-driven, engaged, and socially conscious – Amanda embraces opportunities that allow her to take on issues and support causes that inspire her.

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